Parents' Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact

With increasing survival rates of children born extremely preterm (EPT), before gestational week 28, the post-discharge life of these families has gained significant research interest. Quantitative studies of parental experiences post-discharge have previously reported elevated levels depressive symptoms, posttraumatic stress-disorder and anxiety among the parents. The current investigation aims to qualitatively explore the situation for parents of children born EPT in Sweden during the first year at home. Semi-structured interviews were performed with 17 parents of 14 children born EPT; eight parents were from an early intervention group and nine parents from a group that received treatment as usual, with extended follow-up procedures. Three main themes were identified using a thematic analytic approach: child-related concerns, the inner state of the parent, and changed family dynamics. Parents in the intervention group also expressed themes related to the intervention, as a sense of security and knowledgeable interventionists. The results are discussed in relation to different concepts of health, parent-child interaction and attachment, and models of the recovery processes. In conclusion, parents describe the first year at home as a time of prolonged parental worries for the child as well as concerns regarding the parent's own emotional state.